Living with an inflammatory bowel disease, such as Crohn’s disease or ulcerative colitis, is a challenge. Dealing with comments from the public who don’t understand IBD can be even harder… I’m sure that most of the time people do not mean to be insensitive but it doesn’t stop those comments from being hurtful and annoying.

Here’s what not to say.

1. “You don’t look sick”

This is a biggie, IBD like many other chronic illnesses is sometimes referred to as ‘invisible illnesses’ because on the outside you look OK. People don’t realise that it may have taken every bit of effort to get showered, dressed and out the door that day. That I may have painted on a smile just to get through the day and may be dealing with pain, bleeding, multiple toilet visits, fatigue and just feel like shit.

2. “You have gained weight!”

Yes, I probably have. Because I’m taking steroids that make me gain weight quickly and screw up my body. If you are interested the drugs are also making me have insomnia and I’m growing a beard. You wouldn’t mention anyone else’s weight, so please don’t think you can talk about mine because I am sick.

3. “You have lost so much weight! You look great”

Just don’t talk about weight at all… People with IBD will have their weight fluctuate, if someone has lost a lot of weight it may because they have such horrific diarrhoea that they can’t absorb any nutrients. The weight loss may make them feel weak and terrible, just because society says that thin means beautiful doesn’t make it so.

4. “I know what you are going through”

When people with IBD tell someone about their condition, they often hear all about that person’s digestive problems, it’s probably better to keep details of your diarrhoea or irritable bowel syndrome to yourself.

Unless you have the same condition, it is very difficult to actually understand what it like. You can sympathise but unless you are in the same shit filled boat, you can’t empathise.

5. “You should eat meat/dairy/no dairy/only vegetables/no vegetables”

Please do not feel you have the right to comment on my diet. I have an auto immune disease that causes my illness, though diet can have some affect on symptoms, it is not caused by eating junk food and I can’t be cured by going vegan.

6. “My aunt’s neighbour’s brother in law cured his IBD by….”

No. No he didn’t. Because there is no cure. If there was a cure then I wouldn’t have had my entire colon removed would I…

7. “Can you hold it?”

I can’t. If I tell you I need to go to the toilet, then it is likely I have to go straight away. Being in a situation where you have an accident is mortifying, upsetting and humiliating. If I could hold it then I would, and I do try my best so please be sympathetic and try to understand if I run off mid sentence or if you have to wait around for me because I am a long time in the bathroom.

8. “Why are you so tired, you don’t do anything”

Fatigue can play a huge role in IBD. Either because I have been up 5 or 6 times through the night on the toilet or because of medication I am on, or because I am losing a lot of blood or sometimes for a reason I do not know. Sometimes I have a tiredness so deep in my bones that I feel 100 years old, I am so exhausted that I can’t keep my eyes open and I could cry. A side effect of the fatigue is massive guilt, I feel terrible that I am so tired and that I can’t be ‘normal’ – your comments just make that guilt worse.

You may be only trying to help, but offering ideas for how I can feel better can feel patronising and annoying. I would try anything to feel better and I have probably thought of all those things.

10. “You seemed ok when I saw you out last week”

Despite my illness I still want to try and lead as normal a life as possible. So yes, sometimes I go out and get drunk, sometimes I go on holiday, sometimes I go walking in the countryside. It is sometimes really, really hard to do these things and I have to paint a big smile on my face and do it even when it is tough. That photo of me smiling on the beach doesn’t tell the story that I am exhausted because I barely slept the night before, that I cried that morning because I was in pain or that I had an accident an hour before. Please don’t judge me or think I am faking anything. Life is tough and if I can get just a little bit of time where I pretend to be the same as everyone else, then I am going to take it.

So there we go, my ten things not to say to someone with IBD. Please understand that I do get that most people are only trying to be nice and would hate to think they were upsetting someone, but as we talk more and more about chronic illness I think it is important to talk about the things that can be a pain in the arse to deal with.

I am in no way discouraging people from asking questions or from talking with me about the disease, but there are some things that are good to say and some that are not so much…

Ask questions, ask how I am and try and be sensitive and understanding.

Love Sam xxx

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How about when you have a routine. Mornings are just a bad time of day for me. People in my life know this, yet continually invite me and nag me to come to morning activities specifically. “It would sure be nice to see you in church” even when I haven’t been to a Sunday morning service in 5 years. The entire congregation is awesome, but one of my closest friends occasionally makes this comment, and I DO NOT GET IT. I finally told her to quit saying that and quit inviting me because it was never going to happen. People just don’t get it. And heaven forbid I DO have a good day. Why bother and go, because then people will expect me to be there all the time, right? PS: I’m a pastor’s wife and get SWARMED by well-meaning people who all want to know “HOW I AM” the minute they see me. It is overwhelming to say the least. I spend so much time alone that it actually freaks me out at times. Again, I have a good day and go grocery shopping and I see someone from church and right aways, you can see them calculating “Okay, she’s well enough to be at Costco, but not church. Faker.” If they say how much energy was expended in getting my act together, showering, maybe putting on a bit of makeup and ON A GREAT DAY, blowdrying my hair…and if I still have the energy to get a few things? VICTORY!

I’d also like to mention that I have many, many, many people contacting me appropriately, sending us loving messages, meals and gifts of support and kindness – in abundance. We are truly blessed and supported by this church. I have a feeling I am not alone in my issues, though.

How about when you have a routine. Mornings are just a bad time of day for me. People in my life know this, yet continually invite me and nag me to come to morning activities specifically. “It would sure be nice to see you in church” even when I haven’t been to a Sunday morning service in 5 years. The entire congregation is awesome, but one of my closest friends occasionally makes this comment, and I DO NOT GET IT. I finally told her to quit saying that and quit inviting me because it was never going to happen. People just don’t get it. And heaven forbid I DO have a good day. Why bother and go, because then people will expect me to be there all the time, right? PS: I’m a pastor’s wife and get SWARMED by well-meaning people who all want to know “HOW I AM” the minute they see me. It is overwhelming to say the least. I spend so much time alone that it actually freaks me out at times. Again, I have a good day and go grocery shopping and I see someone from church and right aways, you can see them calculating “Okay, she’s well enough to be at Costco, but not church. Faker.” If they say how much energy was expended in getting my act together, showering, maybe putting on a bit of makeup and ON A GREAT DAY, blowdrying my hair…and if I still have the energy to get a few things? VICTORY!

I’d also like to mention that I have many, many, many people contacting me appropriately, sending us loving messages, meals and gifts of support and kindness – in abundance. We are truly blessed and supported by this church. I have a feeling I am not alone in my issues, though.